Living with “long COVID”: A systematic review and meta-synthesis of qualitative evidence

Objectives Long-term health consequences of coronavirus disease (COVID-19), also known as “long COVID,” has become a global health concern. In this systematic review, we aimed to synthesize the qualitative evidence on lived experiences of people living with long COVID that may inform health policymaking and practice. Methods We searched six major databases and additional sources and systematically retrieved relevant qualitative studies and conducted a meta-synthesis of key findings using the Joanna Briggs Institute (JBI) guidelines and reporting standards of the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) checklist. Results We found 15 articles representing 12 studies out of 619 citations from different sources. These studies provided 133 findings that were categorized into 55 categories. All categories were aggregated to the following synthesized findings: living with complex physical health problems, psychosocial crises of long COVID, slow recovery and rehabilitation, digital resources and information management, changes in social support, and experiences with healthcare providers, services, and systems. Ten studies were from the UK, and others were from Denmark and Italy, which highlights a critical lack of evidence from other countries. Conclusions More representative research is needed to understand long COVID-related experiences from diverse communities and populations. The available evidence informs a high burden of biopsychosocial challenges among people with long COVID that would require multilevel interventions such as strengthening health and social policies and services, engaging patients and caregivers in making decisions and developing resources, and addressing health and socioeconomic disparities associated with long COVID through evidence-based practice.

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Emerging scientific literature recognizes a heavy burden of long COVID conditions such as 69 fatigue, breathlessness, post-exertional malaise, cough, chest pain, headache, sleep problems, 70 difficulties in thinking (also known as "brain fog"), lightheadedness, musculoskeletal pain, 71 depression, anxiety, and other health problems [5,10,12,13] PRISMA checklist is available in Supporting Information file 1. The protocol of this review was 105 prepared in priori that was not registered with any review registries. The complete protocol for 106 this systematic review is available upon request.

Search step
Keywords applied in titles, abstracts, topics, and subject-specific headings 1 "Coronavirus" OR "COVID*" OR "COVID-19" OR "COVID19" OR "SARS-CoV-2" OR "2019 novel coronavirus" OR "2019-nCoV" 2 "Long COVID*" OR "long haul*" OR "long-haul*" OR "post-acute COVID*" OR "late sequela COVID*" OR "persistent COVID*" OR "chronic COVID*" OR "long term COVID*" OR "long-term consequence*" OR "long-term impact*" OR "long-term effect*" OR "post-acute" OR "long-tail" OR "persist* symptom*" OR "prolonged symptom" 6 3 "qualitative stud*" OR "qualitative research" OR "qualitative evidence" OR "qualitative*" OR "thematic analysis" OR "grounded theory" OR "focus group" OR "participant observation" OR "phenomenology" OR "critical theor*" OR "interpretative" OR "ethnograph*" OR "action research" OR "mixed method*" Final search strategy 1 AND 2 AND 3 118 Eligibility and screening of the literature 119 We used a set of eligibility criteria to identify and include individual studies in this review. An  We screened all citations retrieved from the search strategy using a cloud-based software 136 (rayyan.ai). Two authors (AD and FR) independently screened each citation using the eligibility 137 criteria, and all conflicts after the first round of review were addressed through discussion with a 138 third reviewer (MMH). This process was repeated for full-text evaluation, and all articles eligible 139 after this stage were used for data extraction and analysis.

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Data extraction 141 We used a data extraction tool that included items such as study descriptions, place and timeline 142 of the respective study, sample characteristics, study methods and materials, key findings, and 143 conclusions of the authors. Moreover, we extracted study findings as direct statements and 144 metaphors, ensuring the representation of the authors' works in the respective study. In this 145 process, each finding was accompanied by one or more illustrations that were extracted as quotes 146 of the study participants. According to the JBI methodology, each finding was assigned a level of 147 credibility. Findings that were supported by illustrations demonstrating evidence beyond any 148 reasonable doubt were considered "unequivocal," whereas findings with illustrations that could 149 be challenged due to lack of data were considered "credible." Lastly, findings that were not 150 supported by any illustrations from the participants were considered "unsupported."  Data analysis and meta-synthesis 157 8 We synthesized the qualitative data using the JBI meta-aggregation approach that aimed to 158 explore generalizable statements in the form of evidence-based recommendations for healthcare 159 decision-makers and practitioners. In this approach, the synthesized evidence remains sensitive 160 to the interpretation of the primary authors that is both practical and usable in respective    The qualitative analysis expressed patient's experience of unpredictable physical and psychological symptoms of covid-19 with the unsatisfactory healthcare service. And the evaluation of their experience, society, healthcare system will assist to roadmap future service planning to address these symptoms persistence problem. The findings are categorized in themes such as, participant's struggle to cope up with reduced physical activity, selfacceptance of this reduction as well as the fear of this to be permanent, challenges in finding appropriate physical activity advice, approaches to manage symptoms like fatigue, brain fog while trying to resume daily activities and exercise. So, well-tailored advice and support to recommence physical activity for long haulers are recommended.

Ladds et al. (2021) [27]
UK; May-September, 2020 Qualitative; thematic analysis Narrative interview, focused group discussion using email, phone call and video recording, contemporaneous notes 43; Female (n = 35), male (n = 8), age range (32-58 years), hospitalized (n = 7); purposive sampling followed by snowballing from online COVID-19 support group, social media The article has demonstrated a set of co-developed multidisciplinary evidence based standard approaches which ensure equitable and accessible care service with less patient burden and more responsibility and patient involvement. This can be practiced through a potential care pathway model to improve the management of long covid patients.

Razai et al. (2021) [28]
UK; November, 2020 Qualitative; thematic analysis Interview using semi-structured questionnaire via telephone 41; Female (n = 27), male (n = 14, age range (19-82 years), worse QoL: 14, accessed to GP: 30; Simple random sampling from two primary care services The most common symptoms found are fatigue (45%), breathlessness (30%), neurocognitive problem (30%). Patients also experienced little information on safety advice and feeling of fear with isolation. Half of the patients (56%) expected the healthcare staffs to regular follow-up them, and later this has been adapted by the care practices where social prescribers monitored the long covid patients and referred to the GPs, nurses, community support group accordingly. The findings are categorized in different themes, such as, mixed opinion towards the word "brain fog", lived neurocognitive difficulties, fluctuating sickness, mental impact on personal to professional relations and recognition, feeling of guilt, shame, stigma, self-management approaches, challenges in attending healthcare service and describing symptoms. An ongoing therapeutic relationship has been recommended to develop to address these issues. The role of online peer support groups can be expressed under 5 themes, such as feeling up gaps in service, community awareness, engagement, diversity, and social communication. However, these groups can be both beneficial and harmful for improvements. So, by careful use and prioritizing patient concern, the benefits of this groups can be facilitated. According to the findings of the study, altered taste and odor in food consumption affects the nutritional food value, healthy weight, type of food, anxiety, and social interconnection. As olfactory function has important role on food intake with the related quality of life, early intervention should be taken to mitigate the condition. The findings also help medical practitioner to understand the food consumption pattern of the patients.  181 Most studies (n = 10, representing 13 articles) were conducted in the UK, and one study each   Qualitative meta-synthesis 199 A total of 133 findings were identified from 12 studies that were categorized into 55 categories.  Living with persistent symptoms, variations in the magnitude and patterns of health problems,         Financial distress was a key challenge affecting the mental wellbeing of many long COVID 287 patients. Insufficient access to resources that could support recovery and economic wellbeing 288 was experienced by many participants, which informed the need for socioeconomic support for     Thirteen findings (11 credible and two unequivocal) were classified into seven categories that 367 informed a synthesized finding on digital resources for health and information management, as 368 summarized in Table 6.   404 People with long COVID reported the changes in their social support, which were reported in 14 405 findings (4 unequivocal and 10 credible) that were classified into six categories (Table 7). Many 406 participants wanted to share their concerns with their social networks but faced challenges in 407 doing so [31,36]. Social exclusion and isolation were associated with declined social support 408 that critically impacted the overall wellbeing of people with long COVID.  I want to be able to have laughter, I want to be able to go out and be the life and  414 soul of the party, which I'm just not anymore, so I do grieve." ( [31], p4) 415      Access to testing and diagnostic services (C) Access to healthcare services Difficulty accessing and navigating services (U) Accessing care (C) Experiences of accessing GP services for long COVID (C) Lack of access to care (C) Experiences with healthcare providers  Moreover, mental health services should be integrated within primary care and community-based 523 healthcare that may enhance access to those services.  However, psychosocial distress due to overwhelming information, misinformation, or 542 disinformation may have profound population health impacts [43,44].  problems experienced by long-COVID patients, must be addressed using multilevel 571 recommendations that are summarized in Table 9. 572 Table 9: Multilevel recommendations for health promotion in people with long COVID 573

Patients
 Empowering patients with high-quality information and best available evidence on long COVID, associated problems, and resources to address the same  Engaging patients in shared decision-making processes  Encouraging exchange of views, experiences, and opinions on health problems and potential solutions  Educating patients about evidence-based self-management practices  Ensuring timely and continued access to chronic care services Social networks and family caregivers  Educating family caregivers and people within patients' social networks about long COVID and related social challenges  Exploring barriers and facilitators of social networking and supportgiving processes to support the caregivers  Engaging friends and family caregivers in shared decision-making on health promotion among the affected people  Caregiving-related resources and services should be enhanced so that informal caregivers can support the affected individuals HCPs  Ensuring proactive and compassionate health communication  Examining diverse health and social problems that may inform healthcare delivery processes and improve subsequent outcomes  Emphasizing people-centered value-based care  Ensuring easy-to-understand navigation through points of care and supporting patients journey through health services  Organizing shared decision-making sessions engaging all health and social providers, patients, and family caregivers  Providing evidence-based personalized/precision care considering unique set of biopsychosocial problems of individuals Employers and community organizations  Revisiting institutional policies and programs to support long COVID patients and modify their workstyles ensuring optimal health and wellbeing  Engaging medical and public health professionals in organizational health promotion considering the long-term consequences of COVID among internal and external stakeholders  Increasing access to exercise, meditation, and non-pharmacological supportive care can be incorporated within organizational spaces for facilitating sustainable recovery and positive health  Monitoring and evaluation of health alongside organizational processes and outcomes should be prioritized for developing healthy workforce and teams Media and communication platforms  Developing accessible and personalized media platforms or contents for long COVID patients and caregivers  Ensuing the quality and accuracy of evidence shared across platforms  Preventing potential infodemics in digital media through fact-checking tools, increasing mass awareness, and strengthening regulatory measures  Engaging media experts, health communication professionals, psychologist, and other professionals to design safe and people-centered media contents  Enabling individuals and communities to use media adhering to best practices that promote health and prevent unintended consequences Healthcare organizations and systems  Recognizing the growing burden and the complex nature of long COVID-related problems  Emphasizing timely access to diagnostic, therapeutic, referral, and rehabilitative care for managing health problems  Adopting integrated multilevel and transdisciplinary models of care supporting people with long COVID through collaborations among HCPs  Addressing policy challenges that may affect access to care for people with long COVID  Identifying and supporting marginalized or most affected individuals and communities in a population who might need additional care to recover from long COVID  Supporting long-term care and holistic wellbeing through low-cost, community-based, and rehabilitative care services  Prioritizing pro-patient health communication and extending telehealth services for improving long COVID care coverage  Promoting participatory health services development engaging patients and family caregivers and addressing their concerns  Mapping health services gaps and addressing the same for achieving health equity across populations 574 The current evidence informs critical research gaps that require the attention of the scientific 575 community. Most studies in this review are from the UK, which highlights a lack of research 576 representation from other nations, particularly from the low-and middle-income countries.

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There are several limitations of this systematic qualitative review that should be considered 590 while interpreting and using this review. First, we included peer-reviewed articles only. Thus, 591 many articles that were available in preprint servers or other non-reviewed sources were 592 excluded from this review that may potentially affect the overall body of synthesized evidence.

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Second, we used scholarly databases as the main data sources and explored additional sources 594 through hand-searching. Still, it is possible to have published pieces that were available in print 595 versions only that we could not access. Third, our choice of meta-aggregation is widely used in 596 qualitative systematic reviews. However, there are other ways of qualitative meta-research that 597 could have provided additional or different insights compared to the current approach.